Forums


CGRPs (calcitonin-gene-related peptide)

Lyme disease, autoimmune problems and Aimovig / erenumab

  • By skipper

    First I would like to thank the designer of this website for the low key colors and larger font.

    Second is a question I have for the readers on this forum.
    Has anyone had Lyme disease and then taken Aimovig?

    About me: I’ve had Hashimoto’s for a long time and the autoimmune problem is prominent. I’ve had a headache since the turn of the century that varies in intensity from bearable nuisance to unbearable migraine, depending on my level of stress/fatigue. Recently I finished a course of antibiotics for Lyme disease. I got the worst migraines of my adult life from the antibiotics, but they helped overall. Until I tried to work again. Now I’m back at square one. Oh, and I have had chronic diarrhea (microscopic colitis) for nearly three years and I’m tired.

    I am very worried about giving myself this injection. And I am equally worried that I will be seen as rejecting advice/treatment from an excellent neurologist.

    I would love to hear anyone’s advice.

    Reply Created with Sketch. reply
  • By eastcoasta

    Hi Skipper
    I also have Lyme going the holistic route as I don’t do well with antibiotics.

    Two weeks later after the Aimovig I am still dealing with awful side effects nausea,dizziness,insane fatigue,insomnia,constipation, my heart races, shortness of breath and Migraines worsened. Ive read women having break through bleeding and full on periods as well as hair loss. I’ve read people’s comments on Forums on the website reddit. I WOULD HAVE NEVER INJECTED THIS IF ALL SIDE EFFECTS HAD BEEN LISTED! The half life of this is 28 days. Which means it will take a month for half of it to be out of my system. I am so beyond fatigued I can barely get out of bed. Also the label for Aimovig stated immunogenicity can happen.

    Aimovig-Erenumab-aooe is produced using recombinant DNA technology in Chinese hamster ovary (CHO) cells.

    Check out this article I read about this drug

    https://www.hormonesmatter.com/aimovig-miracle-migraine-treatment-unnecessary-risk/

    Here is part of what the article reads. The researcher got this info from Aimovig website for healthcare professionals

    In Studies 1, 2, and 3, 1.3% of patients treated with Aimovig™ discontinued double-blind treatment because of adverse events. Although only injection site irritations are reported by the FDA, the study indicates additional adverse effects, such as cold, upper respiratory tract infection, ankle fracture, viral gastroenteritis, sepsis, colitis, vestibular neuronitis, backpain, migraine, ovarian cyst, and sinusitis. One person also experienced cerebral venous thrombosis (see table 3). The most frequent injection site reactions were injection site pain, injection site erythema, and injection site pruritus—as per the label. Interesting to note that constipation and site irritation are listed as side effects on the label.

    The protein CGRP that Aimovig is binding to is responsible for protecting your heart, pituitary gland, thyroid etc. so I can imagine the long term side effects from this stuff. I WONT be trying it again. I can’t wait for this to be out of my system.

    So please don’t think these side effects are a coincidence or you picked up the flu. It’s this drug. You can also read others experiences on drugs.com

    Reply Created with Sketch. reply
  • By skipper

    eastcoasta, Thank you so much for your response. I am sorry to hear you’ve had a bad reaction. You’ve confirmed my suspicion. They’ve built this up as a miracle cure without being upfront about the immunogenicity. I decided the risk of getting worse wasn’t worth it. I signed up for email replies from this forum but I didn’t get any at all. Thanks again for stopping by to post a reply. Please let us know how you are doing in the future.

    Reply Created with Sketch. reply
    • By eastcoasta

      Skipper I forgot to tell you if you’re looking for a Lyme literate doc you can join the forum on MDjunction and ask them for one in your area. They will send you a message. Hope you’re well.

      Reply Created with Sketch. reply
  • By mrs.s.overall

    I have had two rounds long term of IV antibiotics after having Lyme go undiagnosed for over eight years. Contracted Lyme in 1994; chronic migraines began 1997; hemiplegic migraines began 2000, Lyme diagnosis and first IV treatment 2002.

    I received a Neuro-stimulator implant in 2012 after which I was able to get off of fentanyl and loose 100 pounds I had gained since I had gotten sick.

    I have stopped Botox (limited improvement) to start Aimovig. I took my forth dose of Aimovig earlier this week and have seen MARKED improvement. I did not have a single hemiplegic migraine last month and had only 8 headache days.

    I have noticed a bit of constipation a few days following the injection. I take magnesium for my migraines, so if things get harder than usual, I drink extra water and take an extra magnesium cap.

    I have not noticed any other negative side effects, and I can’t get over the improvement!

    I’ve been sick long enough that, other than my husband, I don’t like anyone to know when I am trying a new treatment. It’s hard enough for me to be disappointed when it doesn’t work, much less everyone around me. I have actually been sharing with my friends and family now that I’m taking this medication.

    Reply Created with Sketch. reply
  • By skipper

    @mrs-s-overall, Thanks for your input. When did your migraines start, in childhood or after the Lyme infection? Do you have any other chronic illnesses, and which ones? You mentioned improvement, but how many headache days did you have before the 4 months of treatement? Thanks.

    Reply Created with Sketch. reply